Livingwithxxy

Ryan is the president and founder of California-based non-profit Living with XXY. Ryan is a 37-year-old with Klinefelter syndrome or 47, XXY. Klinefelter syndrome results from an extra X chromosome, affecting roughly 1 in 500 males. Ryan's parents learned about his XXY diagnosis during his mother's pregnancy. His experiences navigating XXY and those of the over 600 families he's met help guide and inspire Ryan's work today. While Ryan's background includes work as a fine dining chef and action sports photographer, he currently spends most of his time advocating for his community through his non-profit. Living with XXY was officially established in 2019 and focuses on creating a community, spreading awareness, and sharing positive traits for those with an XXY diagnosis. Living with XXY is growing daily, reaching over 40 countries. Ryan is traveling around the US, meeting with clinics, professors/students, other professionals, and families to share the work of Living with XXY and create opportunities for connection for those with XXY.

Brittany is the mother of a 4 1/2-year-old boy named Callan. Their son was experiencing bloody noses at a young age. After a week in the hospital, Callan was diagnosed with Aplastic anemia, which is a rare but serious blood condition that occurs when your bone marrow cannot make enough new blood cells for your body to work. At the same time, he was also diagnosed with Klinefelter syndrome.

Kelly Stine is the mother to Connor, who is 17, a senior in high school. Connor encourages other boys his age to share their stories and help build a community for teenagers with XXY. Connor loves to play Roblox and Brawlstars. He also enjoys his government class because his teacher is super funny. At the end of 10th grade, she noticed his maturity was not developing like others. After some blood work, Kelly noticed his FSH levels were off the charts. She started to learn about Klinefelter syndrome and asked her doctor to do a Karyotype. Once he was diagnosed, they did Micro-Tese which came back negative. Kelly says "starting testosterone has been a night-and-day difference for Connor."

Carson Blake shares with us about her son Louden, who is now four years old and has been in Early Intervention since he was six months old. Carson talks about why EI has been super helpful for her son and his accomplishments. Carson also got her state of Missouri to add Klinefelter syndrome to the First Steps Early Intervention system for infants and toddlers, birth to age three, who have delayed development or diagnosed conditions associated with developmental disabilities.

Anne Price had an NIPT screening due to her age of 41. One week later, while their family was on vacation, her two older kids received a call while waiting for the Finding Nemo ride at Epcot. Her phone rang. Her OBGYN, who had a very somber tone of voice, delivered the news horribly, telling her the results were a sex chromosome abnormality and the mention of Klinefelter syndrome. He said, "The good news is that your child doesn't have Down syndrome." The call got disconnected, and Anne couldn't leave the line, so she started to cry uncontrollably during the ride.

Colleen Sander's son, Jackson, was born at 29 weeks and wasn't speaking at the age of two. Once Jackson started school, he was given speech therapy, and over time, something didn't seem right for Colleen. Jackson, 14, had some routine blood work done a few days before receiving a strange phone call from the NHS on a Sunday evening around 9 p.m. The doctors asked for him to come back and do some follow-up testing. Colleen jumped on Google to research what the results might have meant. She started to cry when she was reading about Klinefelter syndrome, checking all the boxes off that this was most likely what her son could have.

Jessica Henderson's journey to diagnosis started with her firstborn son, Clay, who is now 18. When Clay was two, Jessica's Grandmother offered to pay for speech therapy. School started to become challenging for Clay in the third grade. One of the teachers told Jessica at a parent-teacher conference, "I've just learned to expect less from your son".

Michael Bush is the father to Carson, an 18-year-old diagnosed with XXY at 15, and together, they want to inspire other young men and their parents to do a podcast. Carson shares his story, from being unable to talk about XXY to his love of teaching people about it. At the age of three, Carson hit his peak in growth, and by the time he was five, he started taking growth hormones. Around 12, Carson was experiencing mobility issues, and their family doctor thought he might have Heller and Danlos syndrome. Michael wants people to know that having a child with XXY is okay. Carson grew up being a normal child, riding bikes and playing outside. Michael also wants to encourage parents not to shelter their boys because of this diagnosis and says everyone will face challenges in life.

Carolina is the first person from Brazil to share her story on our podcast. She was 35 when she was pregnant so her OBGYN was concerned due to her older age. She asked her to proceed with doing an NIPT. After the results came in, her doctor called her and said she was having a boy with XXY. The doctor also told her his life would be fine, and that he might have troubles with fertility. Her son is also a rainbow baby, which seems very common among our XXYcommunity.

#103 - Mother of Boy with XXY - Tara Whitfield

Toby Voige, age 15, shares his experience from his recent trip to Denver, Colorado, while participating in research. The Lipids to Fat study aims to see how boys with XXY bodies use fat as an energy source. Dr Shanlee Davis is the lead on this research. If you would like to learn more, please click the link provided and watch the video. Details about the study are in the video description https://www.youtube.com/watch?v=Mub4Mx6TkOk

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#99 - Adult with XXY - Nick Rodriguez

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Deepak's family is originally from India. He was born in Brooklyn and raised in West Texas. At age 28, he and his wife started trying to have kids. After visiting over 14 doctors, many told him he didn't fit the stereotype of having Klinefelter syndrome. At 43, he's decided to share his story to make a difference. He says, "It's been a journey."

Grace Hatton is the mother to four beautiful children. She received Non-invasive prenatal testing (NIPT) with her youngest son. After a personal phone call revealing the diagnosis from her doctor, they both were excited. She felt a sense of calm and comfort in her son's XXY diagnosis and knew she could handle it.

Welcome to our first-ever father-and-son podcast! Michael Bouley is a fantastic dad to Hunter Bouley, age 21. Hunter was born with club foot affecting one leg, which led the doctors to think something else was happening. Around puberty, Hunter was diagnosed with XXY, and things started to make sense as to why he struggled in school with comprehension, math, and physical development. In the 7th grade, he went from homeschooling to public school for the first time. Despite being bullied for looking different over time, it taught Hunter to focus on his goals regardless of the setbacks he faced. Hunter has worked hard his entire life to overcome his challenges. His Instagram shows a well-defined muscular man who has devoted his life to nutrition and working out. He drives a forklift at a lumber yard using his visual memory while working with his hands. He loves hanging out with his family and large-mouth bass fishing. Despite having trouble with expressive language, Hunter knew sharing his story would help others know they are not alone. Hunters Instagram: @hunters.fp

Toby joined track and field at his local high school. Nervous for his first race, Gareth found out and sent his mother this incredible pick me up voice message. This is what supporting eachother is all about and why being open about having XXY is so important. Positive support from our peers is another thing that makes this community incredible.

Surprise! It's a boy! It was a huge surprise and blessing when Allison discovered she was pregnant at 36. After spending much of her adult life not thinking she would have children naturally, she had all but thought that a child of her own would not be a part of her life journey. But then came Theodore, a beautiful and healthy baby boy born with a unique chromosomal variation, XXY. Allison, now 38, and Theodore, now 20 months, want to share their journey through NIPT testing, diagnosis, early hormone intervention, and meeting with a team of specialists to help other parents curious about what that first year of life can look like for parents of a child with XXY, and to ease some of the stress around the unknowns. “At the end of the day, Theo is just like any other kid, and it's up to me, as his parent, to set him up for success and to support him in his journey so he knows that no matter what challenges and obstacles he may face, he has a team of people behind him and cheering for him. I want him to grow up and be proud of who he is, and I wanted to share his story because I know that somewhere, someone needs to hear it and know that everything will be okay.” Allison's Instagram: @abpatrick

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In July of 2020, Antoni Strzelecki, who is from Australia, discovered he had azoospermia. The doctors ordered more testing, and he later found out he had Klinefelter syndrome. After two years of trying to learn and process who he is, he has decided to share his story to help other men like him not feel alone with this diagnosis.

Russell Martin is the first person we know to be able to have kids without medical interventions. After his two boys were all grown up, Russell was diagnosed with mosaic Klinefelter syndrome in his mid 40's. After extensive research on mosaic XXY, even after his doctors told him there was no way he could have XXY, a karyotype test years later revealed he did. What is Mosaic Klinefelter syndrome? Klinefelter mosaics (47, XXY/46, XY) are less severely affected, and the chance of finding sperm in the ejaculate in these males is significantly higher than in nonmosaic (47, XXY) cases. https://livingwithxxy.org/

Saxxon Firestone was diagnosed with Klinefelter syndrome back in 2014 at the age of 24. After experiencing pain in his growing. An ultrasound was ordered and a visit to the urologist confirmed he had XXY.

Scott Stapley got married in 2013, and two years later, after trying for kids, he and his wife realized they needed to get tested. After a sperm sample yielded nothing, Scott went to a urologist who recommended genetic testing. Finding out he had Klinefelter syndrome; he tried Micro-Tese surgery shortly after.

Seth and Erin have a son named Chipper, who was diagnosed with Klinefelter syndrome in utero from non-invasive prenatal testing. They have embraced their son's diagnosis, and Chipper has met all his milestones.

Nathan Johns started trying for kids around 28 years old. After trying for over a year and nothing, he went in for testing. He was told he had a low sperm count and low testosterone, but no further testing was done. After his first marriage failed he met his second wife with her knowing he couldn't have kids. Nathan ended up using embryo adoption and later learned he had Klinefelter syndrome.

Mother Kendra and Son Blake Dill talk about what it's like going thru high school. Blake is 16 years old, a sophomore, and plays in the high school band. After a routine checkup while pregnant, the doctors told her Blake had XXY.

Recently Ryan Bregante and Kelsey Fuglsby had the opportunity to be guest speakers at Hunter College in NYC. The Class is called Abnormal Psychology which has roughly 100 students. This video is just a few of the highlights from our hour-long conversation. 1-500 men are born with Klinefelter syndrome, a genetic condition in which males are born with an extra X chromosome. Ryan was born with XXY and is the founder and president of Living with XXY Nonprofit. Kelsey Fuglsby is the mother of a 14-year-old boy named Elliott, diagnosed at ten years old. Only 25% of our community will receive a diagnosis. 75% will die, never knowing. You can find the video highlights HERE. For more information, please visit: https://livingwithxxy.org/

Charlie Plaisance got married when he was 27 and felt old enough to start trying for kids immediately. After trying for some time, he and his wife decided to get testing done. After giving a sperm sample, charlie learned he had three immobile sperm and later found out he would be diagnosed with Klinefelter syndrome (47 XXY). Charlie and his wife ended up trying Micro-Tese and IVF, which was a success. They are three amazing and unique kids and their family is complete for now. www.livingwithxxy.org

This podcast is from a recent speaking engagement at New York University. The class is applied psychology, and the course is Sexual Identities Across the Lifespan. Ryan Bregante was born with Klinefelter syndrome and is the founder and president of Living with XXY. Kelsey Fuglsby is a mother to a 13-year-old boy, Elliott, who was diagnosed with XXY after birth.

Jennifer Fritz Voige is the mother of a teenager named Toby, a freshman at a big new high school. Jennifer talks about her personal experience advocating for her son's needs. www.livingwithxxy.org

Ted Clark was concerned about the size of his testicles when his girlfriend, a nurse, said they appeared smaller. Going to the doctor with his concerns, his doctor said there might be a tumor in his brain suppressing the growth. After ruling that out, more testing was ordered, and Ted discovered he has Mosaic Klinefelter syndrome (47 XXY). Ted shares the details of his fertility journey. After a successful Micro-Tese and IVF, he now has a beautiful daughter. www.livingwithxxy.org

Richard Martinez jumps right into sharing the details about his life while trying to have kids with his wife. Many questions came up on why nothing was happening. After a diagnosis of Klinefelter syndrome (47 XXY), Richard and his wife went with donor sperm. Richard shares his personal experience about his diagnosis and why sharing your story matters. They have two twin girls. www.livingwithxxy.org

Matt Dalley is 25 years old and living in Provo, Utah. After getting married at 21, Matt and his wife Katie wanted to be young parents. A year of trying with no luck led the doctors to start testing his wife. Matt ended up going to the doctor with a varicose vein in his scrotum, which led him to a sperm test. Ultimately finding out that he had Klinefelter syndrome. www.livingwithxxy.org

Ryan Turesson is from Brisbane, Australia. In 2007, he was trying for kids with his partner. Nothing was happening, so she went in for fertility testing. Her tests returned, saying nothing was wrong. So Ryan went in for testing and later found out he had Klinefelter syndrome. Learning he was sterile and couldn't have kids was devastating, sending him into a dark depression. They decided to do donor sperm since adoption in Australia is extremely difficult. Ryan is now a father to two unique and wonderful boys. www.livingwithxxy.org

Yvette Maano is the mother of a young boy named Sammy. During her pregnancy, she was flagged for her baby boy having Klinefelter syndrome. After her diagnosis, her doctor handed her outdated information and asked if she wanted an abortion. After she declined, her doctor asked her if she was sure about her decision which left her feeling frustrated that she wasn't making a good decision. www.livingwithxxy.org

Ariel Ze'evi might be the first man to share his story openly with the world from Israel. Ariel was diagnosed with Klinefelter syndrome while trying to create a family with his wife. He hid his diagnosis from family and friends for many years. After a successful Micro-Tese surgery and two beautiful boys, Ariel speaks out to break the stigma. He hopes that sharing his story will inspire others to come forward in his country, to create community, and save baby boys from termination. Www.livingwithxxy.org

Jared Pike was diagnosed with Klinefelter syndrome nearly 10 years ago while trying to have kids. After trying for more than five years and multiple sperm tests, a new doctor suggested doing a Karyotype. With his wife's support, Jared decided to take a year off from their fertility journey to process, understand, learn and grieve his new diagnosis. Jared explains in incredible detail how this journey improved his life.

Jake Gray, at the age of 25, found out about his XXY diagnosis while his wife was being tested for some health concerns. The doctor wanted to try Jake for fertility since his wife was flagged for FMA. At 25, he was in shock and denial about his diagnosis. Now 27, Jake is a new father to a baby boy after choosing to use donor sperm. Jake dives deep into the process, emotional stresses, and costs of using a donor. Jakes's Biography can be found Here.

After Sierra Westley Wilson became pregnant at 27, she wanted to know the gender of their baby, so they did NIPT, and they were told they had a 36% chance of their baby having Klinefelter syndrome. Once her son was born, they did a routine blood draw, and two weeks later, they learned their son had 48, XXXY.

In 2021, the day after Christmas, Elliott was hanging out with his niece and nephew, who were 8 and 12. The kids were telling him that he was a fantastic uncle. Suddenly his niece told him he couldn't have kids and that he could adopt if he wanted to. He felt they knew something he didn't know. Elliott Day, from Scotland, in his late 30s, looked into getting his medical records from the NHS. He was diagnosed very young, but no one bothered to tell him.

At 41 years old, Ryan Brown opens up to spread more awareness about his life with Klinefelter syndrome. When he had been trying to have kids with his ex-wife for over a year, the doctors recommended they both do fertility testing. After a sperm sample and a series of other tests, Ryan discovered he had XXY. Ryan is now on track to compete in bodybuilding and is a head chef at a group home.

Jennifer Fritz Voige spent eight agonizing years trying to find her son's Klinefelter syndrome diagnosis. At the age of 5, Toby started to show challenges after they took away his nap. In kindergarten, his teachers noticed some blank stares and let Jennifer know something might be happening. This was the start of their long journey. Toby, now at 14 after his diagnosis in December of 2021, is thriving and started on TRT, making huge strides toward success.

Gareth Landy was the first person on our podcast from Ireland. He was diagnosed with Klinefelter syndrome while trying to start a family. Gareth did his first podcast in March of 2021. Since March, he has been on a mission to raise awareness about male infertility. Gareth talks about his experience and becomes an advocate for other men across western Europe and his fight to normalize life with XXY. With the help of a sperm donor, Gareth and his wife went thru 3 rounds of IVF before falling pregnant with twins. He has biked the entire length of Ireland to raise money for kids with cancer and has run three full marathons. https://livingwithxxy.org/

Jose Ferreira was diagnosed with Klinefelter syndrome while trying to have kids with his wife. A doctor gave them a blood test, and Jose had no idea what XXY was. After learning he was infertile, he experienced mixed emotions and finally realized there was some answer to knowing why he was different. He never thought it was related to his diagnosis. After his diagnosis, he was in denial for years, pushed away support, and tried to live everyday life. Now Jose has come to a level of acceptance to share his extraordinary story to help others. Jose gives excellent insight into his thoughts and has built confidence in himself. He has his dream job and loves learning more about himself.

Whitney Lance received a prenatal diagnosis of Klinefelter syndrome via email from the hospital after a NIPT. In big red letters, it read XXY. Her doctor urged her to see a geneticist, and Whitney panicked and went to google. The geneticist printed information directly from google and didn't have much more information to share.

Bradford Stucki was diagnosed with Klinefelter syndrome/47 XXY while trying to create a family with his wife. After his diagnosis, their quest to create a family turned to adoption. Despite his diagnosis, Bradford went on to earn his Ph.D. in Human Development and Family Science. Bradford is a Licensed Marriage and family therapist with 7+ years of experience working with individuals, couples, parents, children (ages 5-12), and families with many relationships and mental health challenges. https://www.bridgehopefamilytherapy.com/

A very special daughter from donor sperm shares her unique story. She learned about her father having XXY 30 years after she was born from DNA testing. Make sure you grab your tissues for her captivating story. By far one of the most extraordinary stories in the entire podcasting community.

Matthew Keller is a 21-year-old man born and raised in Texas. Matthew was diagnosed with Klinefelter syndrome in high school at 17 years old. After diagnosis, he became angry and didn't want to understand his diagnosis. Learning he was infertile, his family offered to try Micro-TESE (a procedure that takes sperm directly from the testicular tissue of a man's reproductive system). Now that Matthew fully accepts his diagnosis, he wants to help other men and boys with XXY to accept themselves and share their own stories to help others! https://livingwithxxy.org/

Taylor Bernstein is a 25-year-old man living alone in Nashville, Tennessee. Taylor was diagnosed in utero since his mother was in the high-risk age category. Taylor talks about what it was like growing up knowing about having Klinefelter syndrome. Despite his struggles, he has accepted and challenged anyone who says he can't do something. Since moving to Nashville, Taylor started his own company, a personal driving business, and has become very successful. Taylor is very in tune with who he is, how he learns, and what he has to do to break the stigma surrounding XXY. Living With XXY Website.